Muscal Melanoma help?
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Muscal Melanoma help?

› Forums › General Melanoma Community › Muscal Melanoma help?

  • Post
    • July 5, 2014 at 2:14 am
    BrianP
    Participant

    Just found out my uncle was diagnosed with muscal melanoma.  I'm not as familiar with muscal melanoma as I am with your everyday run of the mill melanoma.  Few questions I have if anyone can comment on:

    Is there anywhere and anyone in particular that specializes in or is know as "the place" for muscal melanoma?  I've heard Dr. Hodi and Farber is pretty experienced with muscal melanoma.  He's currently located in Virginia so probably limited to the east coast.

    Current thinking doesn't put a high value on chemo and radiation (other than in combination with immunotherapy) for most melanoma but is that not so with muscal melanoma? 

    I heard that muscal melanoma isn't as responsive to Ipi as other melanoma (something like only 7%).  Does anyone know if this is true.  Has it been anymore responsive to anti-PD1?

     

    Thanks for any advice or information anyone can provide.

    Brian

     

Viewing 14 reply threads
  • Replies
      • July 5, 2014 at 10:43 am
      Maureen038
      Participant

      Brian,

         There is a man in the same trial as my husband (4 doses of ipi3mg/kg with nivo 1 mg/kg, then maintainence  doses of nivo  1mg/kg) who has muscal melanoma. I believe he had two surgeries on his nose and he has some lung mets. While he hasn't had barely any shrinkage at all, he hasn't had any growth either so he is considered stable. He has developed vitiligo like my husband too. We go to Pittsburg on Monday for my husband's last nivo infusion before scans. If he is there, I will see if he is willing to share his information with your uncle. Good luck!

      Maureen

      • July 5, 2014 at 10:43 am
      Maureen038
      Participant

      Brian,

         There is a man in the same trial as my husband (4 doses of ipi3mg/kg with nivo 1 mg/kg, then maintainence  doses of nivo  1mg/kg) who has muscal melanoma. I believe he had two surgeries on his nose and he has some lung mets. While he hasn't had barely any shrinkage at all, he hasn't had any growth either so he is considered stable. He has developed vitiligo like my husband too. We go to Pittsburg on Monday for my husband's last nivo infusion before scans. If he is there, I will see if he is willing to share his information with your uncle. Good luck!

      Maureen

      • July 5, 2014 at 10:43 am
      Maureen038
      Participant

      Brian,

         There is a man in the same trial as my husband (4 doses of ipi3mg/kg with nivo 1 mg/kg, then maintainence  doses of nivo  1mg/kg) who has muscal melanoma. I believe he had two surgeries on his nose and he has some lung mets. While he hasn't had barely any shrinkage at all, he hasn't had any growth either so he is considered stable. He has developed vitiligo like my husband too. We go to Pittsburg on Monday for my husband's last nivo infusion before scans. If he is there, I will see if he is willing to share his information with your uncle. Good luck!

      Maureen

        • July 5, 2014 at 10:55 am
        Maureen038
        Participant

        I didn't mean for that to be anonymous.

        maureen

        • July 5, 2014 at 10:55 am
        Maureen038
        Participant

        I didn't mean for that to be anonymous.

        maureen

        • July 5, 2014 at 10:55 am
        Maureen038
        Participant

        I didn't mean for that to be anonymous.

        maureen

      • July 5, 2014 at 11:27 am
      RJoeyB
      Participant
      Brian,
       
      (FYI, I posted a similar reply to your post over at MIF.)
       
      I'm assuming you mean "mucosal" melanoma?  Not being critical, just pointing it out so if you search for it you'll be more likely to find some helpful imformation.  I know what it is but don't have any experience with it first- or second-hand.  MRF has a brief page here in the patient eduction section at:
       
       
      I haven't seen anything specific about the use of checkpoint inhibitors (ipi or any-PD-1) with mucosal melanoma, but I'm sure they're out there.  Interesting from the MRF page is the note about the high prevalence of the KIT mutation and low prevalence of the BRAF mutation, which obviously drives treatment decisions.  From what I've read elsewhere, the prognosis for mucosal can be worse, but it's not necessarily because of the response rates to treatment options, but because it's often caught later and progressed by the time of diagnosis because it's in more "hidden" areas.
       
      The KIT mutation offers some other treatment options, including imatinib (Gleevec).
       
      For "traditional" treatments like chemotherapy and radiation, I believe the general thinking is the same, chemotherapies like dacarbazine just aren't very effective at all.  I'd caution that the thinking about radiation in melanoma treatment is changing.  Melanoma was long considered "radioresistive", but newer approaches (and my own experience) have shown that it can play a positive role where appropriate and melanoma does respond to a different dosing schedule than you see with many other cancers.  Melanoma responds to fewer doses at much higher "fractions" per dose than is normally given for other tumor types, using techniques like SBRT.  So it can play a role like surgery plays its role.  For metastic melanoma that is already "in the system", neither surgery or radiation is going to be a cure, but it can achieve complete control over a local tumor (or tumors) that may be causing issues.
       
      I hope others out there have more information about mucosal melanoma for you, including specialists who may have more experience with it.  You of course are doing the right thing in seeking it out.  Perhaps Catherine at MIF has some good contacts for you.
       
      Best wishes, let us know what you learn!
      Joe
       
      • July 5, 2014 at 11:27 am
      RJoeyB
      Participant
      Brian,
       
      (FYI, I posted a similar reply to your post over at MIF.)
       
      I'm assuming you mean "mucosal" melanoma?  Not being critical, just pointing it out so if you search for it you'll be more likely to find some helpful imformation.  I know what it is but don't have any experience with it first- or second-hand.  MRF has a brief page here in the patient eduction section at:
       
       
      I haven't seen anything specific about the use of checkpoint inhibitors (ipi or any-PD-1) with mucosal melanoma, but I'm sure they're out there.  Interesting from the MRF page is the note about the high prevalence of the KIT mutation and low prevalence of the BRAF mutation, which obviously drives treatment decisions.  From what I've read elsewhere, the prognosis for mucosal can be worse, but it's not necessarily because of the response rates to treatment options, but because it's often caught later and progressed by the time of diagnosis because it's in more "hidden" areas.
       
      The KIT mutation offers some other treatment options, including imatinib (Gleevec).
       
      For "traditional" treatments like chemotherapy and radiation, I believe the general thinking is the same, chemotherapies like dacarbazine just aren't very effective at all.  I'd caution that the thinking about radiation in melanoma treatment is changing.  Melanoma was long considered "radioresistive", but newer approaches (and my own experience) have shown that it can play a positive role where appropriate and melanoma does respond to a different dosing schedule than you see with many other cancers.  Melanoma responds to fewer doses at much higher "fractions" per dose than is normally given for other tumor types, using techniques like SBRT.  So it can play a role like surgery plays its role.  For metastic melanoma that is already "in the system", neither surgery or radiation is going to be a cure, but it can achieve complete control over a local tumor (or tumors) that may be causing issues.
       
      I hope others out there have more information about mucosal melanoma for you, including specialists who may have more experience with it.  You of course are doing the right thing in seeking it out.  Perhaps Catherine at MIF has some good contacts for you.
       
      Best wishes, let us know what you learn!
      Joe
       
      • July 5, 2014 at 11:27 am
      RJoeyB
      Participant
      Brian,
       
      (FYI, I posted a similar reply to your post over at MIF.)
       
      I'm assuming you mean "mucosal" melanoma?  Not being critical, just pointing it out so if you search for it you'll be more likely to find some helpful imformation.  I know what it is but don't have any experience with it first- or second-hand.  MRF has a brief page here in the patient eduction section at:
       
       
      I haven't seen anything specific about the use of checkpoint inhibitors (ipi or any-PD-1) with mucosal melanoma, but I'm sure they're out there.  Interesting from the MRF page is the note about the high prevalence of the KIT mutation and low prevalence of the BRAF mutation, which obviously drives treatment decisions.  From what I've read elsewhere, the prognosis for mucosal can be worse, but it's not necessarily because of the response rates to treatment options, but because it's often caught later and progressed by the time of diagnosis because it's in more "hidden" areas.
       
      The KIT mutation offers some other treatment options, including imatinib (Gleevec).
       
      For "traditional" treatments like chemotherapy and radiation, I believe the general thinking is the same, chemotherapies like dacarbazine just aren't very effective at all.  I'd caution that the thinking about radiation in melanoma treatment is changing.  Melanoma was long considered "radioresistive", but newer approaches (and my own experience) have shown that it can play a positive role where appropriate and melanoma does respond to a different dosing schedule than you see with many other cancers.  Melanoma responds to fewer doses at much higher "fractions" per dose than is normally given for other tumor types, using techniques like SBRT.  So it can play a role like surgery plays its role.  For metastic melanoma that is already "in the system", neither surgery or radiation is going to be a cure, but it can achieve complete control over a local tumor (or tumors) that may be causing issues.
       
      I hope others out there have more information about mucosal melanoma for you, including specialists who may have more experience with it.  You of course are doing the right thing in seeking it out.  Perhaps Catherine at MIF has some good contacts for you.
       
      Best wishes, let us know what you learn!
      Joe
       
      • July 5, 2014 at 2:46 pm
      CHD
      Participant

      I have mucosal melanoma, though mine was early stage and surgeries have been my only treatment.

      By far, not as much is known about mucosal melanoma treatment.  Surgery remains the first line approach, with radiation being used in some cases effectively for locoregional control.  Not as much known about adjuvant chemo/immunotherapies.  From what I understand, about 10% of mucosal melanomas have the BRAF mutation, another 25% have the KIT mutation. 

      My surgeon recommended UpToDate as having good timely information on mucosal melanoma and the various treatments.  There is a fee for the articles, though, unfortunately, but it sounds like a lot is happening in the field of melanoma research and the information changing rapidly.

      The prognosis for mucosal melanoma is overall poorer than for cutaneous, in part because it is often hidden and more advanced at presentation, but also because it is a more aggressive form of melanoma, so the prognosis is rather poor even when found early.  The prognosis varies quite a bit, though, depending on location.

      In my case, the 5-year prognosis is thought to be around 70%, which is maybe not so bad, just not as good as the 98% it would be had my melanoma been cutaneous.

      If caught early enough, wide local excision offers the best chance of long-term survival.

      Hope some of that is helpful. 

      Good luck!

      • July 5, 2014 at 2:46 pm
      CHD
      Participant

      I have mucosal melanoma, though mine was early stage and surgeries have been my only treatment.

      By far, not as much is known about mucosal melanoma treatment.  Surgery remains the first line approach, with radiation being used in some cases effectively for locoregional control.  Not as much known about adjuvant chemo/immunotherapies.  From what I understand, about 10% of mucosal melanomas have the BRAF mutation, another 25% have the KIT mutation. 

      My surgeon recommended UpToDate as having good timely information on mucosal melanoma and the various treatments.  There is a fee for the articles, though, unfortunately, but it sounds like a lot is happening in the field of melanoma research and the information changing rapidly.

      The prognosis for mucosal melanoma is overall poorer than for cutaneous, in part because it is often hidden and more advanced at presentation, but also because it is a more aggressive form of melanoma, so the prognosis is rather poor even when found early.  The prognosis varies quite a bit, though, depending on location.

      In my case, the 5-year prognosis is thought to be around 70%, which is maybe not so bad, just not as good as the 98% it would be had my melanoma been cutaneous.

      If caught early enough, wide local excision offers the best chance of long-term survival.

      Hope some of that is helpful. 

      Good luck!

      • July 5, 2014 at 2:46 pm
      CHD
      Participant

      I have mucosal melanoma, though mine was early stage and surgeries have been my only treatment.

      By far, not as much is known about mucosal melanoma treatment.  Surgery remains the first line approach, with radiation being used in some cases effectively for locoregional control.  Not as much known about adjuvant chemo/immunotherapies.  From what I understand, about 10% of mucosal melanomas have the BRAF mutation, another 25% have the KIT mutation. 

      My surgeon recommended UpToDate as having good timely information on mucosal melanoma and the various treatments.  There is a fee for the articles, though, unfortunately, but it sounds like a lot is happening in the field of melanoma research and the information changing rapidly.

      The prognosis for mucosal melanoma is overall poorer than for cutaneous, in part because it is often hidden and more advanced at presentation, but also because it is a more aggressive form of melanoma, so the prognosis is rather poor even when found early.  The prognosis varies quite a bit, though, depending on location.

      In my case, the 5-year prognosis is thought to be around 70%, which is maybe not so bad, just not as good as the 98% it would be had my melanoma been cutaneous.

      If caught early enough, wide local excision offers the best chance of long-term survival.

      Hope some of that is helpful. 

      Good luck!

      • July 9, 2014 at 2:17 am
      BrianP
      Participant

      Thanks so much Joe, Maureen, and Cheri.  As you can see from my terrible spelling I really don't know much about mucosal melanoma.  I'll be sure to pass on your information to my uncle.

      Brian

      • July 9, 2014 at 2:17 am
      BrianP
      Participant

      Thanks so much Joe, Maureen, and Cheri.  As you can see from my terrible spelling I really don't know much about mucosal melanoma.  I'll be sure to pass on your information to my uncle.

      Brian

      • July 9, 2014 at 2:17 am
      BrianP
      Participant

      Thanks so much Joe, Maureen, and Cheri.  As you can see from my terrible spelling I really don't know much about mucosal melanoma.  I'll be sure to pass on your information to my uncle.

      Brian

      • July 15, 2014 at 4:45 am
      RJoeyB
      Participant

      Brian, just stumbled across this link in a post on Facebook, looks pretty detailed…

      Primary mucosal melanomas: a comprehensive review

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

      Joe

       

       

      • July 15, 2014 at 4:45 am
      RJoeyB
      Participant

      Brian, just stumbled across this link in a post on Facebook, looks pretty detailed…

      Primary mucosal melanomas: a comprehensive review

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

      Joe

       

       

      • July 15, 2014 at 4:45 am
      RJoeyB
      Participant

      Brian, just stumbled across this link in a post on Facebook, looks pretty detailed…

      Primary mucosal melanomas: a comprehensive review

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

      Joe

       

       

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